This article was originally written for the Next Avenue website on November 4, 2015
I’m used to some amount of ridicule and rejection. I’m a broadcast journalist. In my days as a TV news anchor, and now the co-host of a long running public affairs show on public television in Minnesota, everything from my hairstyle to clothing choice to the bags under my eyes are scrutinized and commented on and sometimes the comments are cutting and rude.
Listeners to my public radio morning news show don’t have the visuals to contend with but some can (and will) quibble with word pronunciation, facts, interview questions or my fitness to be on the air at all. It all depends on the day and it is part of the job.
So, I surprised myself when I started feeling anxious, a little sweaty, and slightly confused as I watched a handful of people walk out of a recent speech. Maybe it was the subject matter.
Death: A real conversation killer
My speech to more than one hundred, mostly older women, was about the extraordinary experience of documenting for the Minnesota Public Radio audience, the life of an extraordinary man who died this past March of complications of ALS. ALS or amyotrophic lateral sclerosis, is a cruel disease that erases, bit by bit, the ability to move one’s limbs, to talk, swallow or even breathe. There is no cure for ALS there’s not even a decent treatment for it and its victims usually die in one to five years. Bruce Kramer lived, in the most vibrant way possible, until the conclusion of his life at the age of 59.
Throughout the course of our radio conversations, Bruce and I became friends and before he died, we wrote a book, We Know How This Ends: Living while Dying.
The book isn’t about ALS. It really isn’t about death and dying. We saw it as a compilation of all that Bruce discovered as Death sat near him, waiting, in the more than four years he lived with a terminal illness. The book is about learning to live a rich and full life in spite of loss and limitation, disability and death. This is a path all of us will have to take and Bruce’s experiences are a useful guide.
If I Ignore It, It will Go Away!
Earlier this summer, I gave another speech to an even larger group, more than one thousand people, and again, the demographic was 60 plus. My publisher and I both thought the audience would be receptive to the wisdom in the book. Our hopes may have been a tad high. After the speech, audience members rushed by, averting their gaze, as if acknowledging the book and our presence it may invite an early visit by the Grim Reaper. We were both surprised. Few books were sold.
The hard won wisdom Bruce Kramer gained goes far beyond one disease and we thought his message, which is ultimately uplifting, would resonate with readers of all ages. Did we miscalculate?
I decided to do the poor woman’s version of audience research and put the question up for discussion on social media, asking my friends and followers on Facebook what they thought. Most figured unbearable memories, aversion to pain and suffering, fear of death, uncertainty about what happens after we die, and denial could have driven some of the audience members out the door.
Dying Fully Alive
Bruce Kramer wouldn’t have been surprised. He wondered, before he died, how our work would be received. He hoped listeners and readers would keep an open mind to what he discovered, that his life had a richness and depth knowing that it was going to end. He felt that by facing his death and embracing it, he had the opportunity to focus on the task of growing into the person he was meant to be and acknowledging our body’s beautiful frailty and impermanence presents a path for all of us to experience the same vibrancy of life he did. He said, “That’s how I want to die. I want to die fully alive.” And indeed he did.
The Blog Authors
Bruce started writing about living with ALS shortly after being diagnosed in 2010. The blog is called the "Dis Ease Diary."
Cathy is a journalist so she's used to writing. Blogging is different because it feels so personal and that can be scary. Bear with her. She'll figure it out!
You may hear from Ev from time to time. Ev is Bruce's beloved wife. She's a music teacher at a French immersion school.